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Myeloma primarily affecting bones; anyone else similar?

by Karen on Sat Apr 30, 2011 6:37 pm

Hi everyone,

Just to recap, I was diagnosed in early December 2010 and have been in a clinical trial with Velcade, Revlimid and decadron since mid-January. I'm now halfway done with the trial (just finished Cycle 4)--there was about a month's break while I did a stem cell harvest, which went very well.

Now that I'm a bit farther along in treatment I'm getting a better idea of how the disease is affecting me specifically. My doctor says the protein levels he tracks are "practically at zero." All of my other blood work is good/normal; no vital organs have been affected, kidney function is normal, etc. I've had one bone marrow biopsy so far, prior to starting treatment, and it came back at about 15%; I won't have another one until I'm done with the trial. I have no abnormal genetic markers.

My doctor told me at my last visit that it appears that in my case the multiple myeloma is primarily affecting the bones. The main ones they are looking at are my two thigh bones and the two upper arms and shoulders. I saw the orthopedic oncologist last week and we looked at my latest X-rays. The two thigh bones and one arm look very good, with just a few "tiny" spots of lesions. The one she's still concerned about, which was the arm that initially caused the pain that ultimately led to the diagnosis, is the right. There are still some fairly large lesions there. However, nothing has gotten worse since I started treatment, and the doctor said she believes that when I come again in 3 months there will be more signs of improvement. She said bone takes a long time to heal. In the meantime it does feel less achy than it did back in the fall. I'm still not supposed to lift anything heavier than 5 lbs and of course must try to avoid falling, but she doesn't think I'm in immediate need of surgery or of fracture.

I gather that the hope is that the combination of drugs I'm taking in the trial, plus the Zometa infusions I'm getting, will work against the tumors in the bones and help eradicate them. I'm wondering if any of you are in a similar situation? Has there been good success at treating these bone lesions with these drugs? I guess all I can do is wait and hope that the next round of X-rays and my next biopsy show a response. I don't know why, but I had been more focused on my blood work , proteins, chromosomes, etc., and apparently I should have been worrying more about my bones :-)

Karen

Karen
Name: Karen
When were you/they diagnosed?: December 2010
Age at diagnosis: 51

Re: Myeloma primarily affecting bones; anyone else similar?

by Dr. Edward Libby on Mon May 02, 2011 11:29 am

Hello Karen,
Bone destruction is a significant cause of complications for patients with myeloma. The bisphosphonates (Zometa and Aredia) have proven efficacy in preventing and treating the complications of bone disease.The clinical trial drugs and Zometa are appropriate therapy for treating the underlying problem (multiple myeloma) and its complications. The lytic lesions ("tiny spots") where myeloma is damaging the bones should improve with this treatment. Your orthopedic oncologist should be able to determine if prophylactic pinning of the right arm is necessary and it sounds as though for the time being she feels that you can be observed. One other consideration is for radiation therapy to the right arm as radiation is often the most effective way to eradicate a large area of invasive myeloma.
It sounds as though you are in good hands. All the best.

Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor

Re: Myeloma primarily affecting bones; anyone else similar?

by Karen on Mon May 02, 2011 1:19 pm

Dear Dr. Libby,

Thanks very much for that information!

I did have radiation therapy in January, but as I understand it it was targeted more at my scapula, which I broke in November. As the orthopedic oncologist told me that the scapula is healing well I am hoping that the radiation contributed to that. However, I didn't know that radiation could also be used to treat the lesions. I will bear that in mind if things get worse. She also told me about the type of surgery that would be done should it be decided that the area needs it.

Right now I'll just keep on with the trial and hope that the worrisome lesions respond to this treatment.

Karen

Karen
Name: Karen
When were you/they diagnosed?: December 2010
Age at diagnosis: 51


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